Botox 2nd shot - Follow-up

NOTE: I originally wrote this email to our family last week on Tuesday, March 10... but have debated posting it on here because I was simply so frustrated after the appointment and it came shining through in my email. I little dose of PMS didn't help the situation one bit. (Did I just tell the entire world that I'm not perfect and had PMS last week?!?!) However, after thinking about the whole situation and having time to step back for a bit, I think it is important to include this in our blog. There are other families dealing with situations similar to ours and it's not always pretty. There are bound to be speedbumps and hiccups along the way.

Tom and I have lived our life and our faith out loud. Our life is and always has been an open book. I'm also post-dating this blog entry so that it shows up correctly on our blog timeline.

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Hey all!

Em had a Botox follow-up appointment at Children's Hospital this afternoon at 4pm. She was in a great mood on the way down especially since we were going to meet up with Aunts Shell and Laura afterwards for supper. We got called back right about 4pm so it was looking good... but then apparently there was some sort of emergency ahead of us and it was nearly 5:30 by the time
the doctor finally came to our exam room. I hate it when they do that because by then Em's patience is running thin and she's played with everything in the room and chatted with everyone in the hall, etc.

Even on the way to Columbus, Em seemed really concerned when I mentioned they might take her shoes off or that they might roll her pant legs up. And when they asked me to do it she threw a royal hissy fit while squirming around and sitting on my lap. Instead of waiting for her to calm down, Dr. B seized the moment to see how much range she had in her ankles. Needless to say, Em was not at all happy and my shoulder was covered in her tears and snot in the few seconds it took to check her out.

Later, when things settled down a bit, Dr. B suggested that I give Em a dose of Benedryl prior to bringing her in... in other words mildly sedate her. I understand what she means... but really?

I wasn't real impressed with that and probably should have just asked the doctor to wait for her to calm down... after all, we waited an hour and half for her to come see us. ;-) But, I was thinking about Em and how to calm her down and get her to cooperate and wasn't feel snippy and brave at the time. Don't get me wrong the doctors that saw her were very nice and played with her and took time with her after the initial eval. But thinking it over in retrospect, we all know Em has an excellent memory and now THIS will stick in her mind the next time we need to come see Dr. B.

She was already worried about getting "ows" (shots) because she remembered that trauma from the last time when we came for the actual botox shots. I have a really strong feeling it's going
to get harder and harder for her to enjoy going down there if she's traumatized each time.

Dr. B still didn't feel that Em had much if any improvement over her initial evaluation (prior to Botox). She simply recommended increasing the dosage the next time Em gets the shots. She asked if Em had a lot of pain from the last set and I said "no" that she has never shown signs of
pain, she is just REALLY bothered by the fact that people hold her down when she gets the shot. Dr. B prescribed a topical numbing cream for us to put on Em an hour before her next Botox shot so that she won't have to deal with the numbing spray they've been using. Great. Now I have to attempt to put lotion on the back of her legs, get her to agree to leave a band-aid over both of them while we drive for an hour to get to our next appointment. This oughta be a hoot.

Some of our other discussions this afternoon were about the possibility of serial casting (using leg casts to hold her feet in position since she's still tiptoeing everywhere). However, Dr. B felt that serial casting could cause more damage. Seeing how Em reacted today, she felt she would
have to be sedated to get the casts put on (and I'm thinking also to have them cut off). Sedation has its risks - the casts could causing scarring if she fought them, etc. Another option our PT recommended was a type of night splint. Dr. B was also concerned about these, Em would probably have to be sedated to have the splint sized and made. They cost about $1,200 for each foot and would have to be replaced about once a year because she would outgrow them. She wasn't sure that would provide enough support and the right kind of bracing that Em would need. The other option that was thrown in the ring was surgery... but was quickly discarded because they said she wasn't old enough... they usually do those around 6 yrs. of age. At the end of the brainstorm-out-loud session, Dr. B. said that Em was a tough one and that she was really making her think.

I didn't leave this appointment feeling as optimistic as the other appointments we've had down there. Em was in much better spirits when we left there and was laughing and teasing with everyone as usual, but I don't feel like we have any firm plan of action yet. I'm going to talk
to her physical therapist again tomorrow and review the day with her. I think I'm also going to start seeking some information on my own and see what others are doing for kids this age. You'd think we had a pit bull or something with as much sedation talk as we had today!

Well, that's enough for tonight... I'm ready for my own sedation. I'm beat.

-jenni